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Imagine, if you will, that an organization existed by the name of "Womanhood Speaks," which, on the surface, appeared to be in support of women's rights.

Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks.  Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.

Doesn't sound too appealing, does it?

This hypothetical situation may seem utterly absurd, but for one segment of the population-- albeit a much smaller subset than that identifying as female-- it isn't all too far from reality.*

I'm speaking of autistics, and more specifically, of the organization known as "Autism Speaks."

Such a deceptive name.  After all, a fair number of autistics are unable to speak; the name Autism Speaks suggests an organization that is willing to speak on their part for greater acceptance and improved services that might enable them to more actively participate in the world while still being able to benefit from what strengths autism might provide.

And autism does have its associated strengths:  a dogged persistence; an ability to look at matters objectively and logically; an ability to focus on details that others might miss entirely.  If we get rid of the "bad" aspects of autism, we're also likely to get rid of these traits that, to be honest, can be extremely advantageous in certain lines of work.

In truth, however, Autism Speaks is not very amiable to autistics.

First off, despite the group's ostensible aim of speaking for autism, there is not one single autistic on its board of directors, or otherwise represented within the ranks of the organization.  There are plenty of autistics who are fully able to advocate for themselves, who are fully able to express what sort of support they would benefit from, and would have benefited from as children; however, Autism Speaks wants very little to do with them.

Secondly, and more importantly, the public face of the organization belies its true intentions.  Perhaps most notably, Autism Speaks recently allied with another organization that's also somewhat infamous in autism circles, an organization by the rather presumptuous name of "Cure Autism Now."

(Just for clarification's sake, I should point out once again that, though I protest cures for autism, I am not against seeking services and support to aid autistics, or even to ease the lives of parents of autistics. This seems to be a very common misunderstanding; see, for instance, this blog post by autistic advocate Joel Smith on that subject.)

Indeed, I'd go so far as to say that some significant members of Autism Speaks' leadership simply don't understand autistics.

Take, for instance, the case of Alison Tepper Singer, the vice president of communications and awareness for Autism Speaks, who was also prominently featured in "Autism Every Day," a fundraising film made by her organization.  In one rather famous-- and controversial-- scene, Singer describes a moment in which she was so exasperated, she had seriously contemplated driving off a bridge with her autistic daughter.  A pretty callous thing for any parent to say, but particularly so in front of the child being described, as was precisely the case in this video.  Should I mention that the child in question is clearly trying to show affection toward her mother, and being shrugged off, mere seconds before this statement is made?

For those who wish to watch the video in question and see the evidence for themselves, I'm not going to give that video any greater Google ranking by directly linking to it, but a link can be found in Wikipedia's article on the film, which also discusses some of the criticism thereof.

And if you think this sort of rhetoric has no effect, tell that to the family of Katie McCarron, a three-year-old autistic child from Illinois who was suffocated to death by her mother slightly over a year ago.  It may be mere coincidence, but it's worth noting that this murder occurred just four days after the initial release of "Autism Every Day," as pointed out by Kristina Chew of Autism Vox.  Chew also quotes Katie's grandfather Mike, who has no kind words for so-called "advocates" of the Autism Speaks sort.  There's not even the excuse of McCarron's mother having been an overburdened parent in the vein of Singer; as the Coalition for Citizens with Disabilities in Illinois mentions, Katie had not lived with her mother for some 20 months before the incident.  Yet that was the primary spin given to the story by the media: an expression of sympathy for the mother, with almost no attention given to the thoughts of those who were Katie's primary caregivers.

Yet Autism Speaks has major clout.  They've allied with popular children's stores such as Toys R Us and Build-a-Bear Workshop, accepting donations from shoppers there (while not making it quite clear what those donations might be used for).  Representatives have appeared on popular TV talk shows such as "Oprah," "The View," and "Larry King Live," presenting a very one-sided view of what life with autism entails-- while barely allowing critics the chance to present an alternate viewpoint.

Oh, and one of their biggest promoters by far was Don Imus.  Draw from that whatever conclusions you wish; I'm not touching that one.

And now they're hitting closer to home for me than ever, in the literal geographic sense.  In Atlanta just this weekend, the combined force of Autism Speaks and Cure Autism Now sponsored a so-called "walk for autism" that gained a fair amount of local and regional publicity.  (An interesting definition of "for," to be sure, when one of the organizations involved is clearly against autism judging from its name alone.)

So that is why I'm posting this blog entry today.  It's to get the word out from the other side of the autism debate, the one that doesn't get all the media attention.  It's in the hope that someone, anyone, who participated in the walk might start to have second thoughts about it.  And most of all, it is with the hope that others like myself can get the support we need to live in a sometimes frustrating society, not a cure that is forced on us without our acceptance.

Autism Speaks surely doesn't speak for this autistic-- nor do they speak for numerous other autistics and advocates, for that matter.

[* This sentence originally read “…than that with two X chromosomes…”, but the author has since realized that not all women have two X chromosomes.]

Originally posted to codeman38 on Sat May 19, 2007 at 07:36 PM PDT.

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Comment Preferences

  •  Do "Autism Speaks (2+ / 0-)
    Recommended by:
    Tigana, marykk

    and "Cure Autisim" have pharma connections?

    •  Not that I know of (3+ / 0-)
      Recommended by:
      Wee Mama, njgoldfinch, Tigana

      At least no direct funding to either organization from the pharm industry that I am aware of, from all that I've read about them.  Anyone who knows of evidence otherwise, feel free to correct me in a reply.

    •  the parents I know who have kids with autism (1+ / 0-)
      Recommended by:
      marykk

      look for "cures" by making changes in the diet, or sometimes using homeopathic remedies or enzymes. If anything, they blame Pharma for putting mercury in vaccines and in the Rhogam shots given to rh-negative mothers. One of my friends whose son is on the spectrum says there is research implicating the antibiotic augmentin, which her son was on numerous times in infancy for chronic ear infections.

      And some medical interventions during labor and delivery are possibly connected to higher rates of autism (e.g. inducing labor and using pitocin to make labor progress).

      So as a rule, I would think that the "Cure Autism Now" types are against big pharma.

      •  That's quackery. (0+ / 0-)

        Especially if the child has primary Autism.  Primaries are born that way and it is noticable almost from birth.  Aquired secondary Autism is another story and I would refer you to the work of Dr. Peter Knobloch of Syracuse University in this regard.

        Look into schools like Anderson at Staatsburg, New York, between Old Rheinbeck and New Hyde Park.  Real autism, real effort, real work.

        Bring a strong heart, cause it will break at how hard it can be to work with Autistic children.

        I love stories of high functioning savants like Taylor Grandin, until you realize Taylor is like one in a billion.

        Today, 5/19/07, 3415 Americans, and untold Iraqis are dead, tens of thousands more maimed. What are YOU going to do today to help end the Bush/Republican war?

        by boilerman10 on Sat May 19, 2007 at 09:04:51 PM PDT

        [ Parent ]

        •  One in a billion is probably a great underestimat (2+ / 0-)
          Recommended by:
          Native Light, wa ma

          Though Temple (not Taylor) Grandin is definitely an exception, the average autistic may not be as hopeless as you might have expected.  Meredyth Goldberg Edelson, a psychology professor at Willamette University, has done a study of various articles regarding autism and mental retardation, and discovered that it's very likely that a majority of autistics do not also exhibit mental retardation.  Indeed, she even cites Leo Kanner's paper in which autism was first described, in which he states that the autistics he studied had "good cognitive potentialities."

          •  I always get those names mixed up. (0+ / 0-)

            Mnay Autistics are like traps, what gets in stays in, but getting it back out can be incredibly difficult.

            Many autistics face difficulties other than retardation.  Louvaks and risperdal are often necessary to keep the extreme rigidity of autistics have as to schedules, routines, and the dreadful obsessive/compulsive symptoms under control.

            A neighbor of mine has an adult primary autistic son who went to Anderson, and is in a group home downstate, and I am amazed at the work they have done with him, the incredible loss of weight, speaking ability improvements, but the continuing OCD rigidity is truly something that has to be seen to be believed.  Things have to happen in a certain way and sequence, or there is hell to pay.

            The young man has been profoundly helped by, and really likes working with horses, and downstate has several horse farms.  Seeing him work with horses is something, he's like a horse whisperer.  He can ride too!  He was terrified at first I guess, but within days he really fell into the job.  Funny how that goes.

            Today, 5/19/07, 3415 Americans, and untold Iraqis are dead, tens of thousands more maimed. What are YOU going to do today to help end the Bush/Republican war?

            by boilerman10 on Sat May 19, 2007 at 10:24:21 PM PDT

            [ Parent ]

  •  I think Neuro-Diversity Can be Positive (3+ / 0-)
    Recommended by:
    Native Light, marykk, RosyFinch

    I wrote a diary on this just a week ago. You may go to my diary page and read the story. I don't think autism is necessarily an illness. Sure, I would like to see a cure for what causes mental retardation. But many autistics have normal and even IQs that are quite high. Their unique characterists can make society stronger.

  •  Tip Jar: In Memoriam (18+ / 0-)

    Katie McCarron is not the only individual whose life was taken simply for her being autistic.

    At the time I post this, Joel Smith's site lists 37 autistics who died at the hands of parents, caregivers, and even medical professionals.  Most of the killers received extremely light sentences compared to similar murders of non-autistics.

    This tip jar is for every one of the victims on that list, with the hope that that list shall not lengthen any further.

  •  You raise an interesting point. (0+ / 0-)

    I can't say I know enough about the subject to offer a good opinion, but you do raise an interesting point.

  •  Autism speaks (2+ / 0-)
    Recommended by:
    njgoldfinch, Tigana

    I understand [gossip] that the management of Autism Speaks is due for a reshuffle, maybe that will bring about a clearer forcus and a wider mandate.
    Cheers
    http://whitterer-autism.blogspot.com

  •  Thanks for an interesting diary (5+ / 0-)

    Do you know what percentage of autistics are "high-functioning" like yourself, versus what percentage are profoundly disabled (i.e. not able to take care of themselves)? Are autistic activists who are high-functioning doing anything to advocate for low-functioning autistics, or is your activism mostly on behalf of fellow high-functioning autistics? If the latter is the case, have the organizations that are run by non-autistics (many of whom, presumably, are parents of low-functioning autistics) simply picked up the slack in an area in which autistic activists themselves haven't done very much?

    Also, if it's not a rude question, how does your autism manifest itself and how has it been a positive or a negative in your life?

    I don't have much experience with autism, so I apologize in advance if any of my questions are offensive.

    •  Good questions... and some answers (3+ / 0-)
      Recommended by:
      Tigana, Native Light, BlueTide

      The 'high-functioning' vs. 'low-functioning' thing is, to be honest, largely irrelevant; a 'low-functioning' appearance may belie a brilliant mind.

      One of the most famous autism advocates online created a site called Getting the Truth Out-- be sure to read the site all the way through, as the point it makes is probably not what you expect.

      <small>(If the young woman featured on that site looks familiar, incidentally, it might be because of a popular YouTube video called "In My Language."  Hopefully I haven't spoiled the premise of the site with that comment...)</small>

      In advocating for support for autistics, I truly do mean all autistics, as do many other advocates who are on the autistic spectrum.

      •  ...and why do HTML tags that work (1+ / 0-)
        Recommended by:
        Tigana

        in the preview not work in the actual posting, anyway?

      •  Thanks. That site is fascinating and... (1+ / 0-)
        Recommended by:
        Tigana

        ...in a way helps counter any fear I might have that my soon-to-be-born daughter will be autistic.

        I'd love to talk to you more about this at some point, but I actually have to go out now. Once again, thanks for this.

        •  autism is much less common in girls (1+ / 0-)
          Recommended by:
          Tigana

          Anyway, if she is not exposed to mercury in utero or through childhood vaccines (make sure she gets ones without thimerosol), the risk of autism is very small.

          If you are worried about it, I would definitely NOT induce labor and try to avoid using pitocin during labor. My friend whose son has autism also says don't let any doctor prescribe the antibiotic Augmentin either.

          •  Do you have any references for this? (1+ / 0-)
            Recommended by:
            Tigana

            There's a very good chance that my wife might be induced, as the baby is likely to be very large (I'm 6'5", 270lbs, and was one of a number of babies in my family who were over 10lbs, plus my wife is very old to be having a first time pregnancy). TIA.

            •  look on www.mothering.com (0+ / 0-)

              They have published a lot of articles on autism. There may be something there.

              I can't remember where I read this, but there was a Japanese study showing a statistically significantly higher rate of autism among children who were born at a hospital that had a particularly high induction rate.

              I would google "pitocin and autism" and see what comes up. One of my friends who has a son on the spectrum has also told me that there is evidence suggesting a connection to pitocin.

              If labor is induced before term, it's almost a certainty that pitocin will be introduced to help things along. Sometimes when labor is induced post-date, and the cervix is ripe, pitocin is not needed.

              I don't think there is solid proof that the huge percentage of births that are induced is linked to autism, but it is a theory out there. No doubt there are multiple causes of autism, with no one thing explaining the "epidemic" we've seen in the last 20 years.

            •  I don't have refs (0+ / 0-)

              but Cytotec, which is a different kind of drug, is often used for induction these days.  Pitocin is less favored because the contractions sometimes spiral into uterine tetanus.

              I have a son who has two half-siblings with autism, so we have been taking care to avoid triggers.  We are not convinced that mercury pitocin, etc., aren't junk science, but why take chances?  We delayed the MMR, breastfed a looong time (no ear infections, either) and  grow our own food or buy organic whenever we can.  So far he seems very "neurotypical."

              Nunca se deve confiar em pata de cavalo, cabeça de juiz e bunda de nenê.

              by rhubarb on Sat May 19, 2007 at 08:47:46 PM PDT

              [ Parent ]

            •  and speaking of large babies (0+ / 0-)

              any midwife will tell you that it is not necessary to induce just because the baby is large. My second son was 9 lbs 10 oz, and I didn't even tear.

      •  Low functioning (0+ / 0-)

        Do you have any stats on low functioning. My step grandson is low functioning. He is 13 and dosn't speak, dosn't interact and dosn't eat other than pancakes for months, then peanut and jelly for monts then back to pancakes. My daughter-in-law, and son don't know what they are gong to do when he turns 18 and is no longer covered by their insurance. Do you have any ideas or resources that are avalible for low functioning autistics once they become of age? Any help would be a godsend. Thanks.

  •  the spectrum is pretty broad (5+ / 0-)

    I have two friends whose kids have autism. Both would be considered "high-functioning," and I understand why some autistics get offended and angry about organizations that are seeking a "cure" for this condition.

    On the other hand, if your child was on a different part of the spectrum, unable to care for himself or herself, unable to interact with other children, unable to speak or read or be toilet-trained, can you honestly tell me that you would not be looking for a "cure"? Would you not worry about what would happen to your child after you and your spouse died?

    •  Honestly, I would be looking for (6+ / 0-)

      a way to get through to the child, a form of communication that the child could understand, and then work from there.  Granted, I might not have much luck with it, but even then I'd prefer that futile search to molding the child into something he or she naturally wasn't...

      •  Great diary, codeman38 (0+ / 0-)

        Thank you, codeman 38.
        I treasure and adore my Auttie and Aspie friends, who are fascinating individuals with great strengths anyone might wish to emulate. Regrettably, not all neurologically atypical conditions are benign, and can be due to mercury/heavy metal and and mycoplasma poisoning.
        This is a good site for information on clearing toxins from the brain:
        http://www.autismwebsite.com/...

      •  question: if you read about children (3+ / 0-)
        Recommended by:
        njgoldfinch, Native Light, elie

        whose ability to communicate has improved following changes in diet and/or homeopathic remedies, does that make you mad at the parents?

        I have read about children who eventually progressed to the point of not being on the spectrum at all. I don't think that their parents "molded them into something they naturally were not."  

        One of my friends whose son is on the spectrum is home-schooling him and not making any effort to change his behavior (except to get him to eat a wider variety of food--there are only about five things he will eat). She loves the quirky things he says and doesn't worry about how he will make his way in the world. I completely understand and respect this attitude.

        However, if my child were in a different place on the spectrum, unable to make friends or communicate even with family, you can be damn well sure that I would be trying various natural remedies.

        One of my brothers was brain-injured at birth. I love him, but am I going to tell you that his brain injury has not diminished his quality of life? No way.

        His situation is different from autism, but he does have a limited ability to look after himself. He's 50, and he's fortunate that he has siblings to help him take care of his affairs. But if I could snap my fingers and "cure" the parts of his brain that were damaged by lack of oxygen at birth, I would do that in a heartbeat.

        So I am sympathetic to parents who are trying to "cure" their children's autism. I am sorry if this offends you.

      •  How do you feel about Lovaas training? (0+ / 0-)

        My son's half-sibling went through it at 3 years old and soon began to talk.  She had been eating as a way of coping, and jumping off of high furniture.  Now she is verbal, mainstreamed in school and doing well.  Even so, she will probably need a sheltered environment for the rest of her life, her mother thinks. The girl doesn't seem to have good insight into her condition, thinks it may be impermanent, etc.

        Nunca se deve confiar em pata de cavalo, cabeça de juiz e bunda de nenê.

        by rhubarb on Sat May 19, 2007 at 08:53:16 PM PDT

        [ Parent ]

        •  Behaviorism in itself OK; Lovaas, not so much (1+ / 0-)
          Recommended by:
          rhubarb

          Lovaas is, as you might have expected, quite controversial among the autistic community as well. Perhaps the best article I've seen on this is Canadian autistic advocate Michelle Dawson's "The Misbehaviour of Behaviourists".

          Behaviorism in and of itself can be useful-- even Dawson doesn't disagree with this; The problem is when, rather than just trying to train out truly dangerous behaviors, it's used to force behaviors that are stressful for the autistic (like eye contact, as I mentioned in another comment) or to remove non-destructive behaviors common to autism that, though odd, are in no way harmful.

          It should also be noted that, aside from autistics, Lovaas' original behaviorist projects also included one known as the Feminine Boy Project, which is exactly what it sounds like: trying to 'masculinize' boys who were effeminate, with the hope of stamping out homosexuality. And no, I am not making this up; it's referenced and cited in the Dawson article linked above.

      •  Hi (3+ / 0-)
        Recommended by:
        rocketito, teacherbill, Native Light

        I have been a teacher working with young autistic kids for more than 25 years.  I sobbed when I first found Temple Grandin's books.  Now I am a big fan of Amanda's films.
        I am so grateful that adults with Autism are speaking out.  I have been groping for answers for years and having my successe, but being shut down because I refused to be a member community who says Autism Speaks and ABA are the only way.
        I have hated ABA since it first came out, because it felt so disrespectful. Now I am actually running an ABA team with the hope that it can be done in a way that honors and supports the child's growth rather than trying to stamp out "behaviors".
        My approach with all children is to help them function and give them joy.  If  what I am doing doesn't address one of those things., it is not worth doing.
        Just my two cents.  I have forwarded your diary on to some colleagues.  

        Be the change you want to see in the world.

        by empathy on Sat May 19, 2007 at 09:46:13 PM PDT

        [ Parent ]

        •  Thank you! (3+ / 0-)
          Recommended by:
          njgoldfinch, Tigana, Native Light

          I'm so glad to hear that you're actually working with autistics in a way that actually respects them for who they are, working with them rather than against them.

          This seems to be one of the things that many in the ABA crowd simply don't get, from what I've noticed. For a group that so frequently discuss stimuli and responses, they often don't recognize a perfectly valid response to a stimulus on the autistic kid's part. Of course a kid's not going to be making eye contact, for instance, if he finds looking into someone's eyes to be overwhelming! It doesn't matter how hard you train the behavior of avoiding eye contact out of the child Skinner-style; eye contact is still going to be a source of stress...

          •  Eye contact (2+ / 0-)
            Recommended by:
            njgoldfinch, Native Light

            Eye contact can be difficult for introverts, not just for those on the autism spectrum.

          •  I think (0+ / 0-)

            that there is  a way of looking at things which is very black and white. Right or wrong.  It is about control and making people fit into a vision of normal/ mainstream.  
            Do you recall John Dean's book about Conservative Authoritarians? Conservatives Without Concscience  I feel that ABA lends itself to that kind of thinking. It's not about each person's unique gifts and potential, it's about everyone fitting into a box.  The box of good worthy valuable acceptable people.  
            Autistic, gay, muslim, fat, mexican...you don't fit.  You will have to prove to us that you can fit in.

            Be the change you want to see in the world.

            by empathy on Sun May 20, 2007 at 01:25:38 PM PDT

            [ Parent ]

  •  Did you see this article in Salon? (2+ / 0-)
    Recommended by:
    Tigana, wa ma

    http://www.salon.com/...

    Sounds like it might be somewhat relevant...

  •  Different objectives (0+ / 0-)

    There are clearly competing objectives.  It is interesting that some autistics have usefully augmented traits but for the most part, autism is about deficits.  I'm happy my autistic son is academically gifted, and so is he;  but both of us would rather he had more normal social relationships.  And, it is not at all clear that his autism is related to his gifts, as his non-autistic siblings are just as academically gifted, and it is clear that his autistic traits hold him back even in the areas in which he excels.

    On the other hand, it really sucks to be told that your condition is a disability that must to be cured, but who says that "cured" autistics won't lead richer lives?  Quite frankly, I think its ridiculous to assume that head-banging, perseverant twirling, and hand flapping somehow contribute to quality of life.

    "This machine kills fascists"--words on Woody Guthrie's guitar

    by Old Left Good Left on Sat May 19, 2007 at 09:20:20 PM PDT

    •  Cure society now (2+ / 0-)
      Recommended by:
      Tigana, Native Light

      Oh, they may not necessarily contribute to the quality of life-- but is there necessarily anything wrong with perseverant twirling and hand-flapping, other than the fact that mere socially inappropriateness?  I can understand wanting to limit head-banging because it's self-injurious, but why can't everyone, autistic and non-autistic, feel free to flap their hands, rock back and forth, and anything else that's not physically harmful or destructive to the environment?

      A little acceptance of quirks can go a long way.

  •  My sister works for Autism Speaks/Cure Autism Now (1+ / 0-)
    Recommended by:
    Native Light

    Believe me when I tell you that she is sensitive to the fact that the name "Cure Autism Now" is the wrong message to send.  In fact, that's one reason why Cure Autism Now merged with Autism Speaks--to get rid of its name.

    Our younger sister is autistic and cannot speak for herself.  That is one reason why she got involved with the organization.

    There's a lot wrong with the organization, and she realizes this.  But judging it by its name alone doesn't do justice to the people working for it.  Many are caring individuals who have been touched by people with autism.  

    •  Does this mean... (0+ / 0-)

      they're going to eventually scrap the CAN name entirely?  As it currently stands, the Autism Speaks web site shows both logos.

      •  that's my understanding. (0+ / 0-)

        Autism Speaks is absorbing CAN.  However, the process is taking awhile.

      •  from the article on the merger you linked (1+ / 0-)
        Recommended by:
        Native Light

        (NEW YORK, NY – February 5, 2007) – Autism Speaks and Cure Autism Now (CAN) have completed their merger, uniting the nation's two leading autism advocacy organizations and their cutting-edge programs for research, treatment, and family services. Mark Roithmayr, president of Autism Speaks, announced today that the Boards of Directors of Autism Speaks and Cure Autism Now respectively had approved the transaction. The groups first reported their intention to merge in November 2006. The combined entity will be known as Autism Speaks.

  •  My birth son (0+ / 0-)

    is a high-functioning autistic child. (It was an open adoption, and we are still very much in touch; when schedules permit he will be visiting with his parents to look at my family photos.)

    I find the occasional mention of ADD being somehow linked (perhaps there's a weak genetic link?) to the autism spectrum to be a very interesting thing; both my husband and I have ADD (his is hyperactive, mine is inattentive) and our two sons are also ADD; one inattentive and one hyperactive. And the inattentive one, like his mother, prefers to be alone, finds routines deeply comforting, has to have things done just a certain way (though he's gotten more flexible as he's gotten older), has odd enthusiasms for certain topics, has intolerances to certain things like tags in his clothing and wrinkles in his socks and pictures on his shirts and rocks when tired or stressed. But he's not considered to be autistic, any more than I am.

    However, I do like the notion of spectrum, and the phrase "non-neurotypical". None of us in this house are neurotypical. But the bills get paid and the yard gets mowed and everyone gets to work and school, mostly with what they were supposed to take, and we're managing.

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